A medical mystery tour

Ta-Shai Pendleton was just 16 in 2005, when her first pregnancy ended with a stillbirth - a boy, six weeks too early.

Three years later, her daughter Savannah, now 2 years old, was born at about seven and a half months. She weighed five pounds at birth and suffered a number of medical problems during her first year due to her premature birth, but she's now a healthy, active toddler.

On Sept. 10, Pendleton gave birth to a second daughter. Za-Niah was born just two weeks before the official due date and weighed a healthy five pounds, 12 ounces.

"Everything went really well this time," says Pendleton. "The nurses were very supportive, the doctors were great, and the baby is just fine."

Pendleton, now 21, is employed by the Madison Public Schools in the after-school program. She's been in a committed relationship with the father of her children, musician Carlos Christian, for eight years.

Her first two babies were conceived and born in Racine. Za-Niah was conceived and born in Madison. The two Wisconsin cities are separated by just 106 miles, but Pendleton says her birthing experiences were a world apart.

And that could provide a clue to solving an engrossing medical mystery.

Wisconsin has the highest infant mortality rate for African American babies in the U.S. In 2002 to 2004, 17.6 of every 1,000 black infants died before they were one year old. This mortality rate is about three times higher than that of white babies born in Wisconsin and puts Wisconsin's black infant mortality rate on a par with some of the world's poorest nations - Qatar, Georgia and Malaysia, for example.

"It is appalling that we have such a high infant mortality rate [among African Americans] in Wisconsin," says Gloria Sarto, UW-Madison professor of obstetrics and gynecology and co-director of the UW Center for Women's Health Research. "Overall, birth outcomes in Wisconsin are very good, but in this specific population it is just dismal."

About 90% of the African American babies who did not survive their first year were born in Racine, Kenosha, Milwaukee, Rock and, until recently, Dane counties. In the southeastern urban corridor, the mortality statistic for African American babies still hovers at close to 20 deaths per 1,000 births. Racine County has the highest rate, a tragic 23.4 deaths per 1,000 births.

But something started to go right in Dane County in about 2001. The county's black infant mortality rate has dropped 67%, from 19.4 per 1,000 live births in 19902001 to 6.4 for 20022007. This improvement means that the infant mortality rate for black babies in Dane County is now approximately the same as for white babies.

What happened in Dane County to bring about this vast improvement?

Was there some significant change in the quality of medical care or access to that care? Is the change related to income or education levels? The age or marital status of mothers? Something in the air or water?

The Infant Mortality Collaborative - a team of people representing the UW School of Medicine and Public Health, the Wisconsin Department of Health Services, medical professionals and community leaders - has been tapped to solve the mystery.

Supported with a $500,000 grant from the Wisconsin Partnership Fund, the group is conducting a comprehensive study. Its goals are twofold: to determine why birth outcomes have improved in Dane County and if what's going on here can provide lessons for saving the lives of babies in places like Racine.

The grant complements a much larger Wisconsin Partnership initiative that has committed up to $10 million to improve African American birth outcomes in Racine, Kenosha, Beloit and Milwaukee. The Infant Mortality Collaborative is working in concert with the state's Healthy Birth Outcomes Initiative, also aimed at improving the troubling infant death rates in Wisconsin.

"We just don't know why infant mortality rates have improved so much in Dane County," says Sarto, the project's principal investigator. "We are going to look at public policy, the health-care delivery system, community support systems and psychological factors that might account for it."

The study will interview mothers, examine clinical records and demographic data, and look at the resources available in Dane and Racine counties.

In mid-August, researchers began interviewing women who gave birth between 2004 and 2006 in Dane and Racine counties. They will interview all the African American women they can locate and who agree to be part of the study. They will also interview a sample of white women.

The interviewers will ask these women about their birth experiences and their perceived quality of care. They'll also ask about community support systems, prenatal education, housing and neighborhoods, and experiences with racism and discrimination.

If these women's experiences are similar to Pendleton's, the research team may find that small distinctions can make a big difference. For example, Pendleton says her doctor in Madison has been much more attentive and communicative.

"At my doctor visits in Racine, they [didn't] really talk to you," she says. "With my son they never told me why I had a stillbirth. And with my daughter they never explained why I was having problems. They just don't communicate with you."

Pendleton's experience in Madison has been markedly different:

"With the visits here, my doctor stays on me. He questions me about what I'm doing. We have one-on-one conversations, and not just dealing with the pregnancy, but my whole life. Like, if I am stressed and how I'm taking care of myself.

"I didn't feel that bond with the doctors in Racine."

Za-Niah could have been another premature, low-birth-weight baby, but Pendleton's Madison doctor examined her at every visit and put her on bed rest when her cervix started to dilate too soon. In Racine, she says, her doctor did not do this exam at the critical times in her pregnancies.

Another part of the research project, headed by Pamela McGranahan, prevention coordinator for Public Health-Madison and Dane County, will use a technique called asset mapping. This involves making an inventory of community resources - things like housing, transportation systems, hospitals and neighborhood clinics, libraries, schools, community centers, prenatal and parenting classes, churches, home nursing visits and more.

"It's important to try to figure out what programs and services are making a difference," McGranahan explains. "When budgets are tight, we need to be very thoughtful about what we cut and what we keep.

"We know that the public health department is better funded in Dane County than in Racine. We know we are unique because we have an ombudsman who advocates for patients who are on Medical Assistance. Dane County is much richer in many kinds of programs and services that support families and communities. We need to know how these things may affect birth outcomes."

Pendleton's experiences suggest that public health and family support services are far better in Dane County.

In Racine, Pendleton says she never got a visit from a home health nurse and had no access to childbirth or parenting classes. In Madison, a public health nurse visited and phoned regularly throughout her pregnancy.

"My nurse is teaching me a lot," Pendleton told Isthmus before Za-Niah was born. "I'm doing things differently because I'm a lot more educated now. I watch movies about babies with the home nurse. I go to birthing classes. And the nurse calls me to check that I'm doing everything I'm supposed to be doing, like taking my prenatal vitamins and getting enough rest."

Such programs and services are expensive, but the costs of caring for premature babies are staggering. The average hospital cost for the birth of a baby born weighing about five and a half pounds or more was about $3,500 in 2005. But for a baby born early and weighing about two pounds, the cost skyrocketed to $165,000. And these babies often have lifelong physical and learning disabilities, meaning higher costs for medical care and education.

Besides programs, the "feel" of a city may play a role, according to Dr. Murray Katcher, a member of the core group studying the problem.

"We go to Racine and Milwaukee frequently, and there are some major differences that we can see almost immediately," says Katcher, chief medical officer for the Bureau of Community Health Promotion in the Wisconsin Division of Public Health. Madison, in contrast, has "less racism and segregation, better housing and safer neighborhoods."

Pendleton, who now lives in a toy-filled but tidy apartment in a racially integrated neighborhood in southwest Madison, agrees.

"In Racine, the neighborhoods are horrible," she says. "There's gangs, drugs, gunfights. There's not really a good place in Racine to live. You can't live in the nicer suburbs if you don't have a car. So you're stuck in these horrible neighborhoods."

In Racine, Pendleton says she had bullets go through her window - twice. "And in four and a half years I lived in Racine, eight of my friends got killed. I would not recommend that town to no one."

Another factor may be huge disparities in income and education. People who live in Milwaukee suburbs like Whitefish Bay and Mequon have an average annual income of more than $60,000. In central Milwaukee, the average income is about $20,000.

Only about 68% of central Milwaukee residents have completed high school. In Mequon, almost 99% are high school graduates.

Madison, on average, is not as wealthy and well educated as these elite suburbs, but the income and educational gaps are less pronounced, and schools and neighborhoods are more racially integrated.

Daniel Stattelman-Scanlan, nursing supervisor for Public Health Madison and Dane County, is also pretty sure that better birth outcomes here owe to more than just what happens in the doctor's office and hospital.

"We may be doing a better job of identifying women who are at high risk because of diabetes, high blood pressure or a previous miscarriage," he says. "If that's so, the research should confirm that."

But he thinks factors like social supports, quality housing and access to the outdoors are also important, because all these things reduce stress levels.

"People think that if you're pregnant and get to the doctor once a month and take good care of yourself, you will have a good outcome. But it's more complicated than that. It's also how people feel about how they are treated in public - if they feel respected and part of the community."

McGranahan interviewed a number of mothers in focus groups for a video project. She concluded that women in Dane County, where housing and schools are fairly well integrated, may feel less discriminated against and more empowered to take charge of their own care (see sidebar).

"For example, if these women didn't click with their doctor, they were likely to change doctors," she says. "I don't think that happens as much in Racine."

Assuming the study can correlate factors to improved results, can Dane County's success be replicated in other places? Katcher hopes so, but he's not overly optimistic. Knowing the right thing to do and doing it are different things.

"If you really want to change communities and improve birth outcome statistics," says Katcher, "you have to provide programs and services for a large number of people. I don't know if we have the funds or political will to do that."

Did assertiveness save a life?

Eight-year-old Krystyn Jones is in third grade at Frank Allis Elementary because her father had a troubling dream and both her parents had the guts to challenge doctors who said she would not survive.

What happened to the Jones family may provide a clue about the disparity in infant mortality statistics between Madison and cities in southeast Wisconsin. Maybe Dane County African American families feel more empowered to take their medical care into their own hands.

When Andrea Jones was seven months into her pregnancy, her husband, Max, dreamed something was wrong with the baby. The couple called their Madison doctor and asked for an ultrasound examination. Their doctor refused, thinking the parents just wanted to determine the baby's sex.

The parents insisted, and the doctor finally agreed.

"The ultrasound test went for two hours, so I knew that something wasn't right," Andrea Jones says.

The family's doctor summoned specialists in high-risk pregnancies to look at the pictures. This team told the Joneses their baby had multiple birth defects - a large cyst on the back, probably indicating spina bifida; a misplaced diaphragm and stomach; and a missing heart chamber.

"They recommended that we end the pregnancy because the baby couldn't survive." Andrea Jones says. "But I just couldn't do that."

Instead, the family decided to hope for the best and prepare for the worst.

A high-risk obstetrician scheduled the delivery at Children's Hospital of Wisconsin in Milwaukee, where the baby was to have heart surgery immediately after birth. She also scheduled another pre-surgery ultrasound a week after the first one.

As they compared images from the two exams, doctors were baffled to find that the baby now had a normal heart, diaphragm and stomach. The cyst was still there, but suddenly the prospects looked much brighter.

A vaginal birth could have ruptured the cyst, so Krystyn was born by Cesarean section at St. Mary's Hospital. She has had some serious medical problems and has needed several surgeries to improve her mobility and ease the discomfort caused by spina bifida. She tires easily and cannot walk long distances, but this past summer she learned to ride a bicycle.

Andrea Jones credits her husband's dream for calling attention to the problem. But part of what saved Krystyn was her parents' willingness to challenge the medical system.